Saturday, December 25, 2010

Merry Christmas and Thank you!

So much joy in our home!

The emotions are so close to the surface. Christmas has never meant more to me...because...Christ has never meant more to me.

Such a blessing to have all of our children together and sharing special memories of this past year and expressing our love for all that Jesus has done for us as we celebrate His birth.

We each gave Jesus a gift this year for Christmas. During a special hour on Christmas Eve before going to bed, we shared what those gifts were.We all cried as the gratitude just flowed.

How blessed we have been by the Lord!

How blessed we have been by each of you!

Thank you!



Merry Christmas!

Sunday, December 19, 2010

The Miracle of Christ

I love Christmas!


I love that we have a huge celebration to commemorate the birth of Jesus Christ. My need for Christ has never been greater. And I'm thrilled to see more and more people turning to Him.


I have witnessed his power in my life and in our family and know that there is nothing He can't do according to His will.

It has been a very interesting, even inspiring last few days.

The news of the Provo Tabernacle burning down was shocking. I personally saw flames raging nearly a full day after the fire fighters had been pouring water for hours on end through their huge fire hoses.

Finally, 36 hours after the fire started, they were able to enter the building to begin the tedious process of finding the fire's cause and also examining the structural integrity of the remaining walls.

I was so moved to see a photo of the firemen holding a picture of Jesus Christ with outstretched hands. This was the first item recovered from the devastated building. The picture was completely charred except for the area immediately around Christ. Seeing this reminded me that no matter what may happen to the physical things around us or what may happen because of trials and challenges of every sort, it is Jesus that matters most. He has all power, wisdom, and strength. He is our Savior. He is our Rescuer. He is the giver of all life and all hope.

That's why Jesus is the heart and focal point of Christmas.

"For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life." (John 3:16)

Provo Firefighters look at a painting of Christ that was burned in the fire. The fire burned the entire image except the image of Christ near the center. Provo City Firefighters continue their work at the historic Provo Tabernacle after the building was destroyed by fire. Saturday, Dec. 18, 2010. (Photo by Scott G Winterton, Deseret News)

MERRY CHRISTMAS!

Sunday, December 12, 2010

"Sparkalies" and Christmas Joy!

Talitha is LOVING all the excitement around our home about Christmas. From the music to the lights, she is fully onboard with this celebration.

Audrey has several nativity scenes on display around the house. I came in the kitchen one morning this week to find Tali playing with one of the little sets that she has adopted for her own. She loves little baby Jesus and likes to keep Mary close by taking care of him.





When it gets dark, she stands by the window looking at all the "sparkalies"--her endearing term for Christmas lights. It doesn't matter how many lights she sees. She just can't contain her delight. Sometimes we'll drive in the car and she'll see the lights in the neighborhoods and just about go crazy trying to take it all in. There's nothing like the enthusiasm of a child at Christmas time. I compare this enthusiasm of children to the words spoken by the angel to herald the birth of the Christ child:

"And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people." (Luke 2:10)

What if we really captured the significance of Christ this year? What if we got so excited just at the thought of Christ that we had to share our joy with someone or we'd pop?!
 
The more I experience His saving grace and rescuing power, the more excited I get to celebrate His birth. So when I see Talitha filled with more excitement than her little body can handle, I feel joy. Real joy.
 
So I say, let’s all join our voices this year with angels past and present in expressing the glad tidings of this sacred hymn:
 
Hark the herald angels sing
"Glory to the newborn King!
Peace on earth and mercy mild
God and sinners reconciled"
Joyful, all ye nations rise
Join the triumph of the skies
With the angelic host proclaim:
"Christ is born in Bethlehem"
Hark! The herald angels sing
"Glory to the newborn King!"

Sunday, December 5, 2010

Persistence and Good News!

The results of the spinal tap are what we had hoped-- clean!

We are SO grateful Talitha's spinal fluid is cancer-free. The ventricles in Tali's brain are still enlarged but her head has adjusted to this and continues to process spinal fluid without assistance from a shunt.

She keeps us laughing now even when we don't necessarily want to be laughing. The other day there was a "warm dispute" happening in another room between two of Tali's siblings. Talitha--with her awkward walking--made her way into that other room and then in a serious voice asked "what is going on here?!"

How she has picked up so much, so fast and knows how to use it all in context is shocking at times. Not exactly what I was expecting especially after brain surgery and the mute-ism that came with it during those first scary days nearly a year ago.

I heard Audrey say in Church today that because of what she has experienced, she knows now that regardless of how bad or hard things get, Christ has the power to get you through it. That's why you can trust Him....completely. (She said it so much more eloquently it just brought tears to my eyes.)

I've been thinking lately about the many lessons that have come through the blessing of trials. I came across a quote from Napolean Hill that I'd read before but didn't appreciate as much as I do now. It shed new light for me on the scriptures that talk about the need for "opposition in all things" and the necessity to "press forward with a steadfastness in Christ" and to "endure to the end":

"There is no substitute for persistence! It cannot be supplanted by any other quality! Remember this, and it will hearten you, in the beginning, when the going may seem difficult and slow.

"Those who have cultivated the habit of persistence seem to enjoy insurance against failure. No matter how many times they are defeated, they finally arrive up toward the top of the ladder. Sometimes it appears that there is a hidden Guide whose duty is to test men through all sorts of discouraging experiences. Those who pick themselves up after defeat and keep on trying, arrive; and the world cries, "Bravo! I knew you could do it!" The hidden Guide lets no one enjoy great achievement without passing the persistence test. Those who can't take it, simply do not make the grade.

"Those who can "take it" are bountifully rewarded for their persistence. They receive, as their compensation, whatever goal they are pursuing. That is not all! They receive something infinitely more important than material compensation--the knowledge that "every failure brings with it the seed of an equivalent advantage!"

No matter what the trial is, no matter how difficult the road, none of us are alone. God will help us. God wants to help us. There is no end to His power and ability to lift us, heal us, supply us, comfort us, rescue us, and save us.

Now that's Good News!

Saturday, November 27, 2010

Tests and gratitude

So much to be grateful for!

Three days in a row of trips to hospitals for tests can wear you out pretty good. But Talitha did great even with one, sometimes two IV pokes in each wrist and each foot and a needle in the back at different points during the course of those three days.



Tali's kidney and heart tests didn't show any problems. (Yay!) The MRI looks great as far as no tumors in the head and spine. (Yay!) We won't have results on the spinal tap till next week but trust that the fluid sample drawn will be cancer free. Perhaps the most exciting of all was that the hearing tests showed the best results from any test so far! (Yay!!)

Thank you, thank you, thank you for your prayers and support. There just is no way to adequately express the gratitude we feel.

Tali is thankful for her new coat she received just in time for the very cold week and the early morning trips to Salt Lake. On both Tuesday and Wednesday she had to be sedated which means no eating or drinking in the morning. On Tuesday, she didn't even ask for food or milk from the time she woke up to the time of the MRI. Shocking as this was, it sure did make the morning much more pleasant for mom.

Thank you, Tali!

Sunday, November 21, 2010

Next round of tests

The holiday season kicks off in a new way for us as we begin the week with 3-days of tests at three different hospitals.

Tomorrow (Monday) is the echocardiogram and kidney test. Talitha will start the day off with a clinic visit at the Oncology offices at the PCMC. There they will insert two IV ports--one in each wrist. Tali is old enough now to know what's about to happen when it comes to needles so there is no delayed reaction like there was last December in PICU. She does not appreciate pokes like this and is quite vocal with her feelings on the matter. (Please let the nurses find good veins the first try.)

After clinic, Audrey will take Tali across the enclosed walkway from the PCMC to the University Hospital to begin her kidney tests. From there, they will go back to the PCMC for the echocardiogram. Then back to the University Hospital to continue/finalize the kidney tests. (Please let Tali have a good night so she'll be ready for a long day ahead.)

Tuesday is another MRI. This one will be at the Riverton IHC facility. They plan to keep the IV ports in Tali's wrists (used in Monday's tests) to spare her additional pain--she will need to be sedated for the head and spinal column scans.

Wednesday will be the sedated hearing test and lumbar puncture/spinal tap at the PCMC. Again, the plan is to keep the IV ports active and use them for access on Wednesday too.

We are encouraged that after a rough week of being sick, Talitha is doing much better. We kept her home from church as a precaution because she has a lingering cough. Suppressed as it is, we are grateful her immune system is showing some spunk.

Thank you for praying for Talitha. She's getting better and improving slowly but surely.

So much to be thankful for...

Happy Thanksgiving!

Tuesday, November 16, 2010

What do we allow to define us?

Talitha picked up a bug that's set up shop--temporarily--in her respiratory system.

Sunday night we heard her start with some congestion and by Monday morning, you could hear it in her lungs. The thought of a hospital trip makes me cringe. So we've been doing everything we can to support her little body in reversing this sickness.

Besides Tali receiving a blessing, we've been praying, keeping her hydrated and filled with good food, good thoughts, and lots of love.

She seems to be in good spirits and plays and follows a normal routine. She tires a little more easily and doesn't resist her afternoon nap as strenuously.

Audrey was quite shocked in going back and looking at pictures of Tali when she was undergoing cancer treatments. Now that she has hair again and is putting on weight and acting so normally, it's hard to see the pictures of her in such a sick condition.

I try not to think about it too much other than to praise the Lord and remember His miracles and to look for His hand in my life. I know God carried us and made it possible to do what we could never have been able to endure on our own.


I've been thinking lately of what we allow to give definition to our lives. This journey with Talitha has of a necessity consumed a large portion of our time. The lessons that have come and keep coming are a blessing for which I'm grateful. 

However, I've noticed that when so much energy and attention is given to one area, unless we are adequately grounded, that part of life can start disproportionately coloring the whole picture, almost like painting a landscape with too few colors as if some of the colors ran out so you start using blue when you should be using yellow.

Part of the challenge then is in facing the trials of life and enduring them well without allowing the problems to define who we are. I know this may sound weird, but I'm starting to see how it could happen that if one particular challenge over-defines who you are, then when that problem passes, you could lose a sense of identity because a large part of how you defined yourself is no longer part of the picture.

A better approach would be to allow the definition of who we really are to be founded upon or closely tied to Christ and His plan of happiness for us. That way, we can build definition around something that doesn't change over time. In fact, we can trace the lines of our character, our self-worth, and what matters most to us over and over knowing that the picture most closely resembling our Lord and Savior will be wonderfully balanced and of enduring value.

In short, a problem can mold a person or a person can mold a problem. The difference is essentially the degree to which Christ is the defining role model.

Sunday, November 7, 2010

Thanksgiving

I know the official holiday doesn't come till later in the month, but I just love Thanksgiving.

We've seen firsthand what a game changer gratitude can be. Like a lot of other heaven-encouraged virtues, gratitude by itself doesn't make everything smooth again but it sure does shine an illuminating light to dispel darkness and encourage hope.

Gratitude also helps remind that God really is over all.  Gratitude leads to remembering which leads to trust which leads to confidence.

Gratitude has a soothing way of dissipating worry. And since worry is a complete and utter waste of time and energy, gratitude is energizing.

I love that we recognize and celebrate Thanksgiving.

You can see by Talitha's smile that she loves this time of year too.


The weather has turned a lot cooler but Tali still insists on going outside as often as she can talk someone in to taking her outside.

Her walking is steadily improving and her love for life and people is obvious. There's just nothing quite as sweet as hearing her say "I love you."

She's gaining weight, growing hair, and trying to be about as normal in good ways as we could hope. We try not to think about upcoming MRIs and tests but you have to pay attention to the calendar even when you'd rather not.

Obvious reminders of past trauma are fading with time--e.g. hair has almost completely covered the scar on the back of Tali's head--and that's another tender mercy from God.

What I don't want to see fade is the lessons and the learning. Life can be a series of distractions and competing voices luring away from what matters most. Good vs. Evil isn't just the substance of fairy tales.

God is real. He has a real plan for our happiness. This life is not the end. Families are sacred and they can be Eternal. And what we do in this life matters. It matters now and it matters in preparation for what's to come after this life.

The miracle of trials is that things can get very focused very quickly on what matters most. And when you seek the Lord especially in the midst of trials, He makes His hand very obvious and that seems to compress the time frames for learning vital lessons.

One of the things I’ve learned is that the difference between a trial accelerating your growth instead of stunting your growth can often be traced to the choice of gratitude instead of anger or bitterness.

So much to learn and so little time, but I'm more grateful than ever for a loving Heavenly Father and the gift of His Son, Jesus Christ.

Sunday, October 31, 2010

Hairy situation

Talitha--rather suddenly--improved leaps and bounds in her walking!

Audrey felt prompted a couple of weeks ago to take Talitha to Dr. Chapman, a NUCCA chiropractor, to see if there may be a connection between her head alignment and her walking. Sure enough, Talitha’s left leg was contracted by nearly a quarter of an inch. After several visits just to get Talitha comfortable with Dr. Chapman, he did one simple adjustment and that did the trick. Even though her left leg is still not coordinated, at least her legs are the same length again.

Talitha also has more confidence now which suggests that the head alignment also improved her sense of balance. Now we have to encourage her brain to retrain the coordination.

At any rate, we’re grateful for the spiritual promptings that have guided and continue to guide this journey.

Tali is so determined to walk in spite of her awkward leg. Today I was walking with her and she let go of my hand and said, "walk by myself" in a very matter of fact little voice.

We were a little more bold in taking her to church today. Last week we just sat at the back and left before the meeting ended. This week we stayed for all of Sacrament Meeting and then took her to say "hi" to the other children in Primary.

For me it was pretty emotional when all the children turned and looked at Tali and waved and said "hi". All those beautiful little children have been praying for Talitha ever since last December. Most of them have not seen her in person for that entire time.

We learn that miracles have not ceased. I was able to share with the children that they have been a part of a miracle just like they've heard about and read about in the scriptures.

Talitha loved being with all the children for a few short minutes. We are so hopeful that her next blood tests will show improvement sufficient to allow for expanded interaction with more and more children without such stress of contact with germs, bacteria, and viruses.

As you can see, Talitha's hair has also inexplicably grown by leaps and bounds too.



Ok, so maybe a bit of stretch on the rapid hair growth...  :-)


Thank you for your continuing prayers, love and support!

Happy Halloween.

Saturday, October 23, 2010

Changing seasons

We have a huge tree in our front yard that's always the first on our street to dress in its fall colors. Then almost as quickly, the golden leaves drop with even a slight wind.

The change happens almost too fast--brilliant gold to barren branches in just days.

The kids make the most of it though and rake leaves into huge piles. Her sisters discovered--no big surprise--that Talitha loves playing in the leaves!


Much to their delight, Tali let them bury her in leaves up to her head. Then she'd push up out of the pile and they'd do it all again...and again.

It's so good to see Talitha playing and enjoying life. I love her happy smile and positive attitude. We pray for her each day that her left side will continue to improve to where she can walk again. She tries so hard to balance but her left leg continues to be very awkward. So, she still gets around mostly by crawling or by duck-walking on her knees.

We noticed that her left eye is drooping a slight bit kind of like Lazy Eye--not real noticeable but something we'll be watching. (The left eye not tracking symmetrically was much more noticeable in the weeks right after the brain surgery.)


Change seems to be the one constant in seasons and in life. We've found that change isn't always comfortable. But it does help things grow--especially people.

Saturday, October 16, 2010

"School" pictures

Talitha loves to see the framed school pictures of her siblings up on the living room wall. On occassion she'll point at each picture and say their names over and over.

Now Tali has her own "school" picture on the wall with her brother and sisters. And what a "school" year it has been. (Maybe Mommy and Daddy need school pictures on the wall for this year too.)


Not too common to have less hair in the 2-year-old picture than in the one 1-year-old version.

We'll take it!

Sunday, October 10, 2010

I will go and do

More blood tests last Thursday to monitor Talitha’s bone marrow progress.

The platelets count and hematocrit reading look great. It’s still the white blood cell count (WBC) and absolute neutrophil count (ANC) that are lagging and keeping Tali out of public places as a precaution against sickness while her defenses are still compromised.

(WBC was 3200 and the ANC was 1000)

One of my favorite stories from the scriptures is of a young boy whose dad asked him to do something really hard. The fact that his dad also happened to be a prophet didn’t make things any easier especially since his brothers were pretty rebellious and didn’t care much for the things of God.

Nephi and his family had left Jerusalem as directed by God which ended up saving their lives from the invasion that destroyed Jerusalem just a few years after they left.

Now Nephi’s father was asking his brothers and him to go back to Jerusalem and risk their lives to get a scriptural record recorded on brass plates so they would have God’s word on their journey to a new land.

Instead of complaining like his brothers had, Nephi responded, “I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them.” (1 Nephi 3:7)

The scriptures are filled with examples of this same faith to do what God requires no matter the cost and certainly in spite of extreme inconvenience.

And in every case, when the Lord commands, He also makes it possible to do.

A couple of days ago I found myself on route to Logan, Utah for an early morning wedding. There’s a beautiful LDS Temple in Logan built by early Utah settlers nearly 150 years ago. That’s where the wedding was held.

The driver I was riding with was none other than the bishop of our ward. (A ward is like a parish.)

Talk about a fascinating and inspiring ride for 2 hours each way!

Suffice it to say, I learned a lot during that drive.

In our church bishops aren’t paid for the service they render to the members. None of the positions/callings in our ward are paid positions. But it’s not really volunteer work either. You see, everyone is expected to help out but you don’t just jump into any position you want.

Whether it’s teaching a Sunday School class, or serving as a secretary, or any of the dozens of positions that need to be filled in order for the ward to run smoothly, members are called by their leaders to serve. And just like Nephi, when the call comes, we have the choice to say “yes” or “no”. But if everyone said “no”, nothing would ever get done.

To make things even more interesting, you aren’t called to a position because of your resume or other apparent qualifications. In almost every case, the person called feels inadequate and the timing of the call is rarely convenient.

Perhaps you’re wondering what any of this has to do with Talitha.

When Talitha was 2 months old, she received a formal blessing—a baby blessing—as is customary to do in our church.

My November 1, 2008 journal entry recalls some of what was spoken in that blessing (the words of the blessing addressed Talitha directly):

• “You came when you did for a specific reason and purpose.”

• “You will touch the lives of many people.”

• “You will have the ability and gift to touch and reach people, even those that are hard to touch and reach.”

• “Blessed to have faith not fear.”

• “Blessed with more courage than the trial.”

Clearly the Lord knew what was coming and blessed little Talitha with specific gifts to help her with those challenges. It’s very humbling to already see the fulfillment of some of what God promised Talitha in a blessing 14 months before her diagnosis.

I’m one of those that Talitha has touched.

I will never be the same and gratefully so.

One of the things that hit me during the trip to Logan with Bishop Edgington is the reality that a trial is like a call to serve. Trials—just like callings—usually:

1. come when least expected,

2. aren’t something you feel prepared to do,

3. make you wonder what the Lord is up to,

4. make you weak in the knees (probably so you’ll remember to fall to your knees),

5. require faith to accept,

6. can be handled with an attitude of your choosing whether good or bad.

7. And most importantly—the Lord ALWAYS provides a way for you to get through the trial if you work with Him and not against Him.

I thought the comparison was a little off when it came to being able to say “yes” or “no” to a trial. But the more I’ve thought about it, the more it’s become clear that we absolutely can accept or reject a trial.

Saying “no” to a calling because we are too busy or too afraid or too anything doesn’t make “too busy” or “too afraid” or “too anything” go away.

The same applies with rejecting a trial. Refusing to accept a trial doesn’t change the reality of the situation. Saying “no” to a trial just leads to anger, bitterness, resentment, and fist shaking at God. Such stubbornness blocks learning and growth that a loving Father in Heaven is anxious to provide.

There’s a great story in the Bible about this very thing. Jonah was called to preach in Ninevah—i.e. he was given a calling to serve. He refused. He was issued the same call again, this time in the form of a trial—i.e. he was thrown overboard and swallowed by a giant fish or whale. He could have said “no” to this trial, yelled at God, and died. Fortunately, he said “yes” to this trial and learned a great lesson and was an instrument in the Lord’s hand in reclaiming the people of Ninevah.

I’m not implying by this example that saying “no” to a calling will bring another call in the form of a trial. I am exploring the similarities between callings and trials and how faith is required to successfully navigate both. It also appears that God uses both to bless and lift His children.

Because of what I’ve experienced, I know for myself that I don’t have to be afraid of what the Lord will ask me to do. I don’t have to worry or fret or hide.

I always believed that God loves His children. Now I know that His love is beyond our greatest imagination. He will stop at nothing to secure our souls that we may forever experience true peace, happiness, and joy.

Callings and trials are an integral part of this life’s experience. It is my hope that we will learn to trust God so much that faith will push aside our fears as we confidently say:

“I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no [callings or trials], save he shall prepare a way…” (1 Nephi 3:7)

Sunday, October 3, 2010

Parable of the Yellow Tang

Thank you for your prayers. Tali was only sick for the one day.

My dad pointed out that while it’s never fun to have a sick child, in Talitha’s case, it’s good to know that her body is able to fight off bugs again. We are so grateful the Lord has heard the many prayers on Tali’s behalf and has blessed her and strengthened her.

A few months ago, I asked a friend to send me a copy of a personal story she had shared at church with the Primary children. She gave me permission to share her story in Talitha’s blog. With a little more passage of time and improved understanding sharpened by experience, I’m even more touched by this story than when I first heard it.

Here is the story:

“Many years ago my father gave my mother a large aquarium for her birthday. They decided to make it a saltwater reef tank, and after much hard work and expense finally the tank was set up and full of colorful coral and many different kinds of fish.

“There were countless colors and sizes of fish Mom could choose to put in her aquarium, but from the beginning, Mom’s favorite fish was the Yellow Tang. Yellow was always Mom’s favorite color, and from the minute she saw that large, brilliant fish in the pet store we all knew that was what we would get for the aquarium.

“Mom’s Yellow Tang was healthy and strong, and was the most beautiful fish in the tank. My father had invested in several expensive filters, lighting, and other equipment to make sure the water was clean and the fish stayed vibrant and healthy. One day, we noticed that Mom’s Yellow Tang wasn’t looking so good. He first lost some of his bright color and looked dingy, dirty yellow. Soon he stopped swimming and just hung listlessly in the water.

“Mom and Dad checked to make sure the filter equipment was working, that the temperature was correct, and everything else they could think of. All the other fish seemed healthy, but Mom’s Yellow Tang got worse and worse. Soon he had tiny black spots on his sides, and his fins drooped down.

“One morning the aquarium lights came on and we saw the Yellow Tang swimming on his side, his gills heaving. He looked like he was dying, and we didn’t know how to help him. Dad got on the phone and called the pet store and asked for the trusted fish expert who had helped us set up the tank from the beginning. Dad described what had happened to our tang. After learning that all the other fish were ok, he said our Yellow Tang had “Black Ich”. The way to help him be rid of the Ich was to give him a 15 minute “freshwater bath”. This sounded crazy because we wondered how a delicate and sick saltwater fish could live for 15 minutes in plain freshwater!?! When dad questioned this strategy, the expert said that the secret was that the Ich would die in freshwater before the Tang would. If we left the Tang in the freshwater bath long enough to kill the Ich but got him out before he died, he would be cured. It sounded crazy, but what else could we do? The fish was already close to death.

“Dad filled a large bowl with tap water and brought it down to the tank. Mom and all of us kids were gathered around nervously watching the events unfold. Dad got the net and easily caught Mom’s Yellow Tang and placed him in the bowl. Immediately the fish dropped to the bottom of the bowl, and his gills pumped desperately as the strange water filled his lungs. Mom wondered aloud if this was a good idea, but dad was looking his stopwatch and said we were going to do this as instructed for the full 15 minutes no matter what. All the kids looked at each other and thought that what we were doing was crazy, that the fish expert didn’t know what he was talking about. Put the saltwater fish in freshwater to make him better? It sure didn’t look like he was feeling better. It seemed like we were only making his death more painful.

“For ten minutes, the fish seemed to get weaker and weaker. Mom asked again if we should take him out and put him in the large saltwater tank where at least the Tang could breathe, but Dad said no, and checked his stopwatch. There were five minutes left before we could put the Tang back in the big tank. We all stood somberly around the freshwater bowl, watching the Yellow Tang die.

“After 12 minutes had passed, we saw to some astonishment that Mom’s Yellow Tang turned back upright, and was swimming. He was still breathing hard, but there appeared to be some small black spots floating in the water. He seemed to get stronger and stronger. After 15 minutes, Dad gave the ok, and Mom caught her tang in the net and gently placed him back in the saltwater tank. He stayed upright, and the black spots were gone from his sides. He was still a little pale, but after a few days he was back to normal, a brilliant yellow that caught the eye of everyone who saw the tank.”


Thank you to Julie Whiteley for this beautiful story.

I can't help but see two parallels.

The way in which the cancer experts fought Talitha's disease had me feeling like the kids in the story. How could something as crazy as putting poison in her body make Tali feel better?

And waiting the full "15 minutes" can feel like an eternity.

But the more significant parallel I see has to do with Christ and his matchless power to heal us from sin and help us through the many afflictions and challenges of life. Like in the Bible story of Naaman, the Lord has ways of cleansing us and helping us that might seem downright crazy or even bruise our pride. After all, Naaman was the captain of the host of the king of Syria and Elisha the prophet only sent a lowly servant to tell Naaman to go wash seven times in the waters of Jordan.

No fanfare of trumpets. Just simple instructions requiring faith.

And so it is with us. Most of what God asks us to do has no fancy frills, nor does it require a fancy stage production. Yet in the simplicity of Faith and Repentance are found the keys to the saving grace of our Lord and Savior, Jesus Christ.
 
And if we can just endure for those seemingly long "15 minutes", the black scales of sin and spiritual blindness that are making us sick and holding us back will fall off.
 
Yes, we can put complete trust in Christ!
 
He is the ultimate expert and knows exactly how to remove all cause of disease and save His children.

Friday, September 24, 2010

Bug and a hair brush

Talitha has had a great week up until about 5 hours ago. She picked up some bug and is throwing up about every half hour.

After she chucks she feels great and seems perfectly happy and content. Then she wants to eat and have more milk.

After about 4 repeating cycles of not-quite-getting-the-bucket-there-in-time, the food is on hold and we're trying just water. She doesn't have a fever so we don't have much to go on yet.


She's a little tired but doesn't look sick in these photos that I just took a few minutes ago. (I've been doing a lot better laying off the camera since saying goodbye to the daily blog updates. But I just had to snap a few when I saw her having such a good ol' time with the brush alternating between her hair, then daddy's hair, then mommy's.)


I'm praying that the sickness that popped up this afternoon with no apparent provocation will decide it has the wrong address and go away.

Friday, September 17, 2010

It's time

This blog began as a series of daily emails from my brother to family members.

To relieve the pressure of having to repeat vital information about Talitha's serious condition again and again, I was able to take few minutes each night as I drove from the hospital to my mother-in-law's home to verbally update my brother on the events from the day and he would compile the data and forward it on.

Those early emails became the first posts of this blog.

At the point where I could emotionally function again to some degree I began posting daily updates to this blog personally. (Many thanks to the kind family and extended family who helped me set up and learn to use a blog.)

These past 265 days have been filled with miracles, learning, heartache, joy, stress, hope, gratitude, and love.

Some nights the words came easily. Many nights were a struggle.

The healing I've witnessed and experienced is completely real and undeniable.

Physical healing, if not the most important, has been the most obvious.

While the daily journey will from this point be less public, Talitha's fulfillment of her mission and purpose has only just begun.

We expect the play-by-play details to now be less frequently reported. Weekly or "as-needed" reports probably make more sense given the less dramatic, less urgent nature of the day to day pieces.

Our faith in Jesus Christ has been our refuge from this very unexpected storm.

These recent trials have encouraged us most persuasively to seek and follow the Good Shepherd more intently.

I pray that faith in Christ may continue to increase to the extent that storms are and will continue to be a part of life. Jesus is the Master over the terrifying, stormy elements; His calming intervention both soothes and rescues.

There are no words to adequately express our gratitude for the countless prayers from friends, family, neighbors and even strangers. You have been His hands in lifting our burdens, sharing of your substance, providing relief in every way possible.

We love you.

We pray that the Lord will richly bless you and reward you abundantly for your many kindnesses and unselfish generosity towards Talitha and our whole family.

We will never be the same and thankfully so.

For me, the light blue wrist band that says "Pray for Talitha" has become symbolic of not just the Lord raising our daughter from peril but also His boundless mercy, power, and grace to raise all of us to be more than we have been and to do more than we have done before.

The wrist band reminds me to pray for those who are experiencing hardship and then seek for ways to help lift burdens within my circle of influence. I have learned this and many other important lessons by watching you and seeing the way you have prayed for and served and lifted us.

We've learned for ourselves that angels are real and most the time they visit wearing something other than white clothes and halos.

Thank you, thank you, thank you!

And may the honor and glory be forever to Him who gives us life and blessings beyond calculation.

Thursday, September 16, 2010

Aunties and Cousins

One thing about some of the Polynesian cultures that I love is their ready acceptance to call you "family." In fact, many working at the Polynesian Culture Center were calling everyone "cousin" right from the start. It was a great way to break down stiffness surrounding a bunch of strangers thrown together in a tour group.

As we took Malorie to BYUH last week, we looked up some friends of people from home in hopes that if Malorie needed something they might be able to help her. This brought me some peace as I left my second born thousands of miles away from home. On one occasion, a woman whom we had just met enthusiastically said she would be more than happy to look out for Mal and said, "Just call us your aunties."

One thing we have found during this journey with Talitha is that we have a lot of family. We thank all of you for being our "aunties" as we've needed so much of your support.

Mahalo Cousins!!

Wednesday, September 15, 2010

Transition

A rather anti-climatic if not unnecessary exit interview with the bone marrow transplant team today as they "officially" handed Talitha back over to the oncology team to manage her maintenance program.

Thank you to all who have continued praying for Tali that her bone marrow may continue to heal and grow stronger and stronger toward the more abundant production of white blood cells.

Thank you also for praying that her sense of balance may return and that she will soon learn to walk again. She is showing great interest in walking in spite of her awkwardness. She took more steps tonight than she has in a long time as she kind of half teetered, half staggered her way from Madeline's bed to Afton's bed while saying goodnight to her sisters in their room.

We have so much to be grateful for!

Tuesday, September 14, 2010

Reporting on the most recent MRIs

Talitha's MRI results look good.

The spine and head are clear of any abnormal growths or concerns.

The ventricles still show more fluid than what would be considered normal but according to my neurologist brother the brain is very adaptive especially before five years old and the fluid in Tali's head seems to be circulating just fine and not causing any problems.

So, another encouraging test result to report along this journey of faith.

To me, each little miracle is noteworthy.

I thank the Lord for it.

This is His victory.

Monday, September 13, 2010

Good vs. Better(?)

Talitha and her daddy have been having a great time...

...and...

Talitha and her daddy are ready for Tali's mommy to come home.



I can't remember where Malorie got these glasses but ever since she brought them home, Tali has loved playing with them.

This is the first time she's let me take her picture with them on. She's so cute with them but usually by the time I run and get the camera, she's done playing with them and no amount of coaxing changes her mind.

Normally, the glasses aren't upside down on her face but I wasn't about to mess with them.

I'll never forget what the Nurse Practitioner told me clear back when Talitha was in the Pediatric Intensive Care Unit and I was fussing with her blankets or this or that to try to make her even more comfortable:

"Better is the enemy of good."

All too often I make things worse by meddling or trying too hard to make them a little bit better instead of just appreciating that they are already really good.

And good can be ok if you let it.

Sunday, September 12, 2010

I'm a pretty girl

I appreciate it when everyone plays nicely together because they don't always.

Talitha had so much fun getting her sister Afton to laugh and laugh. I tried to get some of Tali's crazy antics on video but she stopped as soon as she saw me getting the camera ready.

So we had to settle for Five Little Monkeys. I love how she tried to keep going while taking a cucumber food break right in the middle.



When I was putting Tali's pajamas on her tonight, she looked at me as said, "I'm a pretty girl."

Yes, Tali, you are a pretty girl and not just because you hair is growing back.

Saturday, September 11, 2010

Morning scripture reading

Talitha loves to do whatever her siblings do. So naturally, when we read scriptures together in the morning, Tali wants to be more and more a part of the action.

It wasn't enough this morning to share with one of her sisters. She needed to have her own scripture book.


I have to admit, Tali's cuteness can be distracting at times. She doesn't bother waiting for her turn to read but just starts talking away in some foreign tongue known only to herself and the angels.

Tonight, Tali helped me put her older sisters to bed and when she saw them kneeling by their beds to pray, she had to jump right down there by them. She knelt first by Afton for an appropriate moment before scooting herself over by Madeline where she again knelt by her bed and put her hands together in proper prayer fashion with her head bowed.

Unfortunately, Talitha also mimics other things she sees happen around the home. Not really the cute kind of things I'd care to take pictures of and post on a blog.

Hopefully, with enough scripture study and prayer we'll find a way to make it through this life with a few less avoidable bumps and bruises.

Friday, September 10, 2010

Numbers dropped

Talitha's lab results today showed an unexpected drop in the white blood cell count and ANC numbers. In fact, Tali's ANC a little over two weeks ago was more than two and a half times higher than today's numbers.

She's borderline neutropenic again.

They tried to reassure me at the hospital clinic by telling me that it can take a year or more for the blood counts to normalize but still, they can't account for the substantial drop at this point.

Because Tali no longer has a central line, they had to insert an IV needle in her wrist to gain access for the blood draws and to administer the anesthesia to sedate her for her MRI. Poor Tali was not happy about the needle. And to make matters worse, they had to do THREE needle inserts before they were able to get one that worked.

Tali was very clear with them through her hollers that she was not a happy camper. But by the time the IV team had packed up their things to leave, Talitha had calmed down and actually said "thank you" to them as they left.  (Just made me wanna cry.)

I love little children and their innate ability to forgive and forget.

The MRIs of Tali's head and spinal cord seemed to have gone well enough. We don't know the results yet but are hoping that nothing out of the ordinary shows up.

I have to admit I'm disappointed about the drop in the ANC and white blood cell count. I really thought we'd be having Talitha back at church with us this month or next.  Now they are advising us to not plan on it until mid to late November at the earliest.

Please pray for Talitha's bone marrow that it may be strengthened to be able to produce the abundance of white blood cells that her little body needs.

Thank you.

Thursday, September 9, 2010

I'm hungry...really hungry

Grandma Wood has been staying with us since Audrey left with her sister to "take" Malorie to school.

I'll be taking Grandma back to Salt Lake in the morning when I take Talitha to the hospital for her next MRI.

So grateful for the help with everything. (Tali loved having her grandma here while her dad was at work and the older kids were at school.)

When Grandma went in to get Talitha after her nap, Tali looked up at her and said, "I'm hungry...really hungry." Well, grandmas are good at solving problems like that and soon Tali had consumed nearly an entire banana.

If there was any doubt before, there's none now: Talitha has her appetite back!

Wednesday, September 8, 2010

I'll come back

Another one of Talitha's older sisters left for college today. Malorie starts her freshman year at BYU-H next week.

It's hard to explain to a 2-year old that Malorie will be gone till the middle of December. Tali definitely knew something was going on with suitcases going out to the car and even told me a couple of times to "stop!" as I was carrying bags to the vehicle.

Another adjustment to make.

Life is full of them.

At one point this afternoon, Talitha just kept saying over and over, "I'll come back. I'll come back."

So many things that can mean.

Maybe it's simply what her sister told her before she drove off.

Maybe it's more.

Tali is (and daddy is) going to miss Malorie.

Tuesday, September 7, 2010

The Lord's Prayer

From time to time, the words of Jesus as He taught people to pray come to mind as I am praying.

Each line is a beautiful example and demonstration of faith. As trials of life come in varying degrees of heat and intensity, the pattern Jesus set for effective prayer has been and continues to be of great value in helping me learn to:

1. Acknowledge God in His station high above my own where He is able to see everything especially what I can't see.

"Our Father who art in heaven, hallowed be thy name."

2. Remember that God wants what's best for me. And if I could see what He sees, I'd want what He wants for me too. By aligning with His will, I'm opening myself up for the best of the best solution(s) to my challenges.

"Thy kingdom come. Thy will be done on earth as it is in heaven."

3. Trust in the provident hand of the Lord to send forth manna from His heavens. I must prepare all I can in obedience to His commands. But then I must not put my trust in the fruits of my earthly labors, the arm of my flesh. All my earthly supply may be taken from me in an instant. However, the shelves in the heavenly storehouse are never bare.

"Give us this day our daily bread."

3. Shift to a framework of gratitude. My debts to Christ are infinitely greater that what anyone else might owe me. Instead of focusing on what I don't have or all the supposed wrongs others may have committed against me, I see that I am lost without Him and will gladly forgive the "mote" or small-sized claim I have against others in exchange for Christ looking past the "beam" of my own eye.
 
"And forgive us our debts, as we forgive our debtors."

4. Put on the whole armor, ready for battle each day. The war between good and evil rages on. The way of safety is prepared if I will but pray for it and work for it.
 
"And lead us not into temptation, but deliver us from evil."

5. Keep my eye single to His glory. This will help me avoid the ever-present pitfalls of pride and judgment that would otherwise blind me and ensnare me.

"For thine is the kingdom, and the power, and the glory, forever. Amen."

God is real. He has blessed me by His grace beyond anything of personal merit. He continues to bless and lift Talitha and our whole family. His goodness is limitless and His capacity and power to rescue and save are endless.

Monday, September 6, 2010

Tongue in cheek

"God gives little children such sweet voices so you won't say 'no' to them."

That was the classic statement of the day made by Talitha's mother.

Seems I'm always being accused of being too much of a softy with Tali.

Now I know that it's all God's doing.

He's the one that gave Tali her sweet, little, can't-say-no-to voice.

And who am I to stand in the way of God's will?

:-)

Sunday, September 5, 2010

A little bit of church

I took Talitha to church for about 10-15 minutes today. We just sat out in the foyer and listened to one song during Sacrament Meeting.

Little by little we'll need to get comfortable taking her to places with a lot of people again. Today was a little step toward that.

Except for the one week I took her to the services at the hospital, Tali hasn't been to church since December 20, 2009.


Before loading up in the stroller to walk to church, I had her lean up against the door to take her picture in her little dress.  She was so excited for our little adventure.

Still no further progress with the walking. She just doesn't seem to be able to find her balance without help and doesn't like the unstable sensation.

All in good time.

Saturday, September 4, 2010

Retaining a remission

I've heard the word "remission" used to describe someone who is cancer free (e.g. their cancer is in remission).

In looking up the definition, I found that remission means: "the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity." 

That definition seems to fit what we've been told. As reported this last week, the spinal tap shows an "absence of [cancer] activity" in Talitha. However, secondary cancers are always a concern once you've battled the primary cancer into remission.

I guess that's why the doctors say the cancer is in remission and then they keep doing follow-up exams for years and years to monitor and catch it quick if the disease returns.

I vote for permanent remission.

In reading the scriptures, I've found that the remission word is used to describe forgiveness of sin.

Just like physical disease can weaken and even destroy the human body, spiritual disease can weaken and destroy our spiritual bodies.

In doing a quick search of the scriptures online, I found 46 verses that use the word remission as it relates to being healed or forgiven from the adverse effects of sin. In some of those verses, the word "retain" was used (e.g. retain a remission of your sins).

So it seems to me that remaining disease-free has application both when speaking of physical challenges like cancer and also spiritual challenges like sin.

There are specific things that we are currently doing and will continue to do throughout Talitha's life to support and preserve her physical state of remission.

The scriptures are very clear regarding the things we must do to receive a remission of sins and then to retain that remission throughout our lives.

As great as our desires are for physical well being, how much greater should be the desires for spiritual well being.

When Jesus was confronted with the criticism of the scribes at the time He forgave the sins of a young man stricken with the disease called palsy, He replied with this classic question, "Whether is it easier to say to the sick of the palsy, Thy sins be forgiven thee; or to say, Arise, and take up thy bed, and walk?" (Mark 2:9)

Then Jesus proceeded to heal the physical disease, having just a few moments earlier healed this same young man from the more consequential spiritual disease.

My hope and prayer is that our joy in seeing the Lord raise Talitha from her bed of affliction might be a timely reminder of the even greater, eternal joy to be found in Christ's power to raise us all from our spiritual beds of affliction.

Friday, September 3, 2010

Missing sisters

Talitha has been doing pretty good being at home with her mom while Afton and Madeline have been at school. Her sister Malorie hasn't started college yet so she's been around a lot to keep her company.

But today, Malorie drove to Cedar City with Afton and Madeline to spend the night with Elisa who's down at SUU.

Tali was so sad when they left. She's pretty tight with her sisters.

So, this evening, she got to spend some time with her brother, Trevor. They had a good time together while the parents slipped out for a few minutes to regroup and pretend like it was date night.

Everyone seemed to survive just fine.

Thursday, September 2, 2010

Tali looks healthy

As Audrey takes Talitha on walks in the stroller, there have been several neighbors and friends who have commented that Tali looks good and healthy. We appreciate the encouragement as we begin looking at what "regular" life with Talitha might be like.

I hope it won't be too many more weeks before Talitha can be at church with us and in other more crowed public places.

She is looking really good.

Her hair has almost covered the scars on the back of her head and her color looks very good. Her eyes aren't as droopy now and other than a runny nose, she doesn't look like she's sick anymore.

She seems to have good energy. Other than her left leg that still has some stiffness that makes it hard for her to balance and walk, she appears to be physically normal.

We'll just keep taking it one day at a time.

Patience...

Wednesday, September 1, 2010

Rebirth and the 100 day mark

Our friend sent a very enthusiastic happy-birthday email to us for Talitha. In the message she said, "It is a rebirth and such a miracle. I am grateful to God for his mercy."

I love that.

Today marks the important 100-day point since Tali's third and final BMT birthday.

On May 24th I wrote:
"We had quite a celebration at the hospital this morning as doctors, nurses, techs, administrators, and various other hospital staff packed into Talitha's room to sing "Happy Bone-Marrow-Transplant Birthday to You". The singing was awful as advertised and exhilarating. Her last transplant!"

It seems like yesterday and forever ago.

The high-dose chemo had completely eliminated her bone marrow over the weekend and the infusion of her "transplanted" cells marked the beginning of a new life as the new bone marrow engrafted over the ensuing 11 days.

Tali will have another MRI on the 10th of September. Then we'll meet with the BMT doctors on the 15th for a final debrief before being passed back to Oncology for the official start of the long-term monitoring phase of this journey.

In light our experiences with Talitha, I've pondered the scriptures that talk about rebirth or being born again.

The Bible describes a brief, but important meeting between the Savior and Nicodemus:

"Jesus answered and said unto him, Verily, verily, I say unto thee, Except a man be born again, he cannot see the kingdom of God.

"Nicodemus saith unto him, How can a man be born when he is old? can he enter the second time into his mother’s womb, and be born?

"Jesus answered, Verily, verily, I say unto thee, Except a man be born of water and of the Spirit, he cannot enter into the kingdom of God.

"That which is born of the flesh is flesh; and that which is born of the Spirit is spirit.

"Marvel not that I said unto thee, Ye must be born again." (John 3:3-7)

There's something very sacred about following Christ and taking upon us His name and becoming His children.

"And now, because of the covenant which ye have made ye shall be called the children of Christ, his sons, and his daughters; for behold, this day he hath spiritually begotten you; for ye say that your hearts are changed through faith on his name; therefore, ye are born of him and have become his sons and his daughters.

"And under this head ye are made free, and there is no other head whereby ye can be made free. There is no other name given whereby salvation cometh; therefore, I would that ye should take upon you the name of Christ, all you that have entered into the covenant with God that ye should be obedient unto the end of your lives.

"And it shall come to pass that whosoever doeth this shall be found at the right hand of God, for he shall know the name by which he is called; for he shall be called by the name of Christ." (Mosiah 5:7-9)

I'm grateful that Talitha has been granted a fresh start, a new birth, a new lease on life.

One day just a few short years from now, Tali will have a chance for yet another rebirth. Just like Nicodemus, she will get to choose to enter the waters of baptism and formally take upon herself the name of Christ. At that sacred time the symbolism of birth will be evident as so beautifully stated in Moses 6:59:

"...inasmuch as ye were born into the world by water, and blood, and the spirit, which I have made, and so became of dust a living soul, even so ye must be born again into the kingdom of heaven, of water, and of the Spirit, and be cleansed by blood, even the blood of mine Only Begotten; that ye might be sanctified from all sin, and enjoy the words of eternal life in this world, and eternal life in the world to come, even immortal glory."

I'm grateful for the words of eternal life that sustain us during this mortal sojourn. I'm grateful for the hope I have that has been made possible by Christ. I've come to know for myself that being born of Him is worth it even when the trials of faith at times seem heavy to bear.

The good news and foundation of His gospel can be simply stated: those that are born of Him are also saved by Him.

Tuesday, August 31, 2010

Happy Birthday, Talitha!

It's hard to put into words the feelings I have that Talitha is with us to celebrate her second birthday.

Gratitude and joy certainly come to mind.

We received word that last Wednesday's spinal tap analysis came back showing no cancer cells again. Can't think of a better birthday gift than that even if it wasn't wrapped in pretty paper with a bow.

The gift of healing was made possible by a loving Savior that is able to help us physically and spiritually. It has been and continues to be a miracle.

Tali truly enjoyed her special day.


She loved the singing, the presents, the food, the candles, and all the enthusiasm that comes with a heartfelt celebration.



I think that may be why there was an extra special feeling in the air today. This birthday was more than a milestone; it was a celebration of life and all that the Lord has taught us, done for us, and helped us with.

A very happy birthday, Talitha, and a wonderful year ahead!

Monday, August 30, 2010

Fuzz turning to hair

As I sang to Talitha tonight before putting her to bed, I lightly rubbed the back of her head where her hair is starting to grow back and cover the 5 inch scar from her brain surgery.

There's quite a bit of fine hair that's growing in thick enough that I was able to rub it backwards "against the grain" and actually feel hair not just fuzz.

Oh, the little things that get me excited these days.

Speaking of "little" things...

...Tali's "big" day is tommorrow!

Sunday, August 29, 2010

Please and thank you!

Before Talitha was diagnosed with a brain tumor back in December, her older sister had taught her a few words in sign language. One of these was the word "please".

Many of you may remember that this early connection to a few signs proved invaluable when we were waiting and praying for Talitha to regain her capacity for speech following the first operation.

Since then, our friends--whose daughter Sada has also been battling brain tumors--let us borrow some Signing Time DVDs. What a blessing it has been for Talitha to learn many more words in sign language as she's been learning and relearning words in English.

In one of the Signing Time DVDs the words "please" and "thank you" are taught with a very engaging song that kind of gets stuck in your head.

Lately, when Talitha is very adamant about getting something she really wants, she doesn't stop at "please" to get it. In fact, she unknowingly engages the law of attraction by speaking as if the thing she wants has already happened.

She does this by speaking and signing "please and thank you" all together as if intended to be one phrase. And once that potent phrase is invoked it cannot be denied.

Her success rate in using this inventive combination of words simultaneously (instead of the normal before and after) is high enough I don't envision her dropping the approach any time soon.

She does fill our home with smiles!

Saturday, August 28, 2010

First post-aqua-guard bath

Bath time without the aqua-guard shield!


I guess it's not really that big of a deal. But sometimes little things you took for granted in the past mean a little bit more when you see life from a different perspective.


Talitha had a great time and there wasn't the stress of keeping the central line from getting wet.

(Bubble Mohawk compliments of older sister Madeline.)

Friday, August 27, 2010

Meltdowns and manipulations

Talitha woke up at around 3am for some reason.

Her favorite--and only--beverage of choice is rice milk. So that's what she wanted to drink at 3am, of course.

I got her water instead, not wanting there to be any kind of "reward" associated with her getting up at 3am. Well, that was totally unacceptable to her.  And she quickly reduced herself to a pitiful pile of pathetic tears.

To say that the unyieldingness of her parents was a deep disappointment to her is an understatement.

After a while, peace was restored and her mean parents retired to their room once again to see what rest if any could be salvaged from the remnants of the night.

Because of the age gap--8 years--between Afton and Talitha, having a youngest child is not exactly a new experience. But because of the cancer circumstances, we have for some months now been more concerned about waiting on her hand and foot than is normally advisable.

I guess we should have expected a fair amount of push back in our attempts to un-spoil our little angel.

We're ever so grateful she's still with us.

Thursday, August 26, 2010

Dillies gone

Audrey asked Talitha where her "dillies" were this morning--that's what we called her central line tubes. Tali instinctively looked under her shirt and was a bit perplexed that they were no longer there.

She's had those "dillies" for over one fourth of her life. It occurred to me that she doesn't remember not having a central line.

Tali's physical therapists came today to help move things toward Talitha walking again. Usually shy around people other than family, Tali was in an entertaining mood and even started showing off with a little dancing jig she made up on the spot.

Never a dull moment, I tell ya.

Wednesday, August 25, 2010

Day 93 post-BMT; Central line removed

Much to her parent's delight--and the doctors' relief--Talitha's counts finally climbed out of the neutropenic danger zone.

Today was day 93 post-BMT (bone marrow transplant). Day 100 is the critical point if the counts don't show signs of recovery.

I'm saying a lot of "thank you" prayers.

The white blood cell count is still low but it climbed from 2,300 on August 11th to 4,500 today. (6,000 is the low end of the reference values.)

The ANC number is looking great!  It was stuck in the 700-900 range ever since Tali left the hospital. Suddenly it decided to join the party and jumped up to 2,900! (1,500 is the low end of the reference values.)

The only problem spot in today's blood tests is the liver readings. They show that Tali is still processing an abnormally large volume of stuff her body is fighting to get rid of. I guess that's understandable given the assault on her system for all the past months. I pray that her liver will be strengthened and enabled to bear the burdens placed in its care.

The hearing test came back with some mixed results. Her right ear has normal hearing now in the low, mid, and high ranges. First time that's been the case in any of her hearing tests.

The left ear is fine in the mid range but is showing issues with the low and high ranges. The type of readings they were getting indicate a strong probability that Tali has fluid in her ear.  Hopefully, the fluid is from an infection and not from permanent damage. She was sneezing quite a bit this morning and had a runny nose so she may have picked up a bug. (She also had a slight fever this afternoon and evening.)

Interesting that she was spared any illness while her infection fighting blood counts were dangerously low. And now that the counts are higher, she's showing some signs of infection. We're so grateful the angels kept the bugs away for so long and that her immune system is finally starting to come back on line.

After Audrey met up with a very sleepy Talitha in the recovery room, she was a little shocked to see no central line apparatus protruding from her little girl. It's just been there so long it became a part of her. And now that part was missing. A very strange sensation.

No mesh top, no cords hanging down, just a little bandage covering a small hole where the tubes had been.

For the first time in a long time, Talitha is sleeping peacefully without bulky baggage tucked in netting around her torso.

Yay!

Tuesday, August 24, 2010

Maintaining faith

I watched Audrey change—for the last time hopefully—the dressing that covers Talitha's central line.

Talitha cried as the adhesive pulled her skin. Changing the bandage and cleansing the area around the central-line-entry-point is not a fun operation for Tali or her mom. It has become as routine as giving Tali a bath.

In fact, it's hard to remember back to when Talitha did not have a central line.

Now, if all goes well tomorrow as we expect, the daily saline flushes, heparin locks, dressing changes, mesh-netting tops, aqua-guards for bath time, and emergency clamps on our key chains will suddenly become a thing of the past.

And gratefully so.

I find that I've been a bit anxious about Tali getting another spinal tap. If they didn't find cancer cells in the last spinal fluid exam they won't find cancer cells this time either, right?

Seems that faith is like doing dishes. No matter how clean I wash the dishes today, those same dishes require washing tomorrow and the next day and so forth.

So it is with faith. No matter how much I believe in God and trust Him today, I still need to believe and trust tomorrow and the next day and so forth.

Prayer is like that too.

So is reading the scriptures.

So is keeping the commandments.

Like breathing oxygen, if I stop doing certain things it can get bad...fast.

Even at this moment, I'm reminding myself of that beautiful phrase I heard back in April and have repeated many times since: "our faith is in Jesus Christ and is not dependant on outcomes."

Getting bad news about Talitha (or any of our children) would be difficult--as we've already experienced. But losing my faith because something didn't go the way I wanted it to or thought it should would be tragic.

That's why it's so important to seek the Lord early and build upon the rock of Christ before the storms of life rage. Come what may, the Rock will not budge for Christ is stronger than it all.

But build on the sand or the philosophies of the world and even a mild storm can shake you and break you. I can't think of anything more perilous than a faith that waits and depends on how things may or may not turn out.

So please, Lord, help me get all the way off the sand and all the way onto the Rock.

Monday, August 23, 2010

Tomatoes!

Of all the foods we'd love Talitha to like, tomatoes would have to be high on the list.

Well, as luck would have it, she doesn't like tomatoes...

...she LOVES tomatoes!

Our neighborhood has been blessed with an abundance of tomatoes this year so Tali should have an ample supply. Lots of miniature yellow and red tomatoes are ready for harvest. Our neighbors have been kind both in supplying tomato plants to us early in the season which are now producing fruit and also in giving Talitha these little ripened tomatoes to hold and to eat.

Foods like tomatoes that keep nasty cancer bugs away will be a real support to Tali throughout her life. We pray she will completely heal now and also avoid secondary cancers that lurk in the shadows of cancer survivors.

Thank you all for your continuing prayers and support.

Sunday, August 22, 2010

Play time

Tali and Daddy had lots of play time today.

We played on the trampoline for a while just looking up at the beautiful sky and white clouds. Then we went on a walk, read books, played with toys and even put pretzels in between Tali's toes.



She thought the pretzels in the toes thing was pretty silly but then decided she liked it and wanted to keep them there.


So many fun things to do in the summertime.

Tali was so excited to see the children walking by after church. As long as the crowd isn't too big, we're trying to let her get closer to people. She loves children and gets so excited to visit with "friends".

Please, please, please let her counts be high enough this week so she can start being around lots and lots of kids and people. She needs it and yearns for it.

Saturday, August 21, 2010

Reflections on refinement

Audrey and I took our oldest daughter to Cedar City today. She begins her second year at Southern Utah University on Monday.

Plenty of windshield time today. Lots of opportunity to talk and reflect.

While our oldest begins her second year of college, our youngest is a week or so away from finishing up her second year of life. So much to be grateful for at both ends of our children spectrum.

The refining fire is more than a little warm at times but we're grateful all the same. We have seen the Lord's hand again and again. He has set the boundaries beyond which the trials cannot pass. That's why He is the master refiner.

While driving home tonight, we talked about what refining does to precious metals. One of the most important things happens when the metal is heated. It becomes malleable. That means it is capable of being formed in the refiners hands into a thing of beauty and great worth.

Also, when the impurities have been removed, the metal is stronger than before.

We agreed in the end that just like fire does to precious metals, refining trials can make us more malleable in God's hands and strengthen us on the way toward becoming better sons and daughters of Christ. Nowhere have the fires of affliction been hotter than in the Atonement's Garden of Gethsemane and on its cross of Calvary.

As the one who paid the price for each of us individually, Christ is uniquely positioned to know exactly what we are going through. And that's why He is able to control the elements, including the fires of challenge through which we must each pass.

I love Him for it and will be eternally in His debt.

Friday, August 20, 2010

Another countdown

Next Wednesday is another milestone point for Talitha.

Besides looking for an uptick in her white blood cell count, she will be sedated for another spinal tap and hearing test. Then, while she is still asleep, they will remove the central line from her chest.

I don't feel the same anxiousness about this upcoming spinal tap. But I will continue to pray that she remains cancer free.

It will be strange at first not having the daily maintenance to perform on the central line. It won't be so easy to have blood tests done but the extra risks of having a portal opening right to the heart will be eliminated.

One step closer to Tali re-entering society.

Thursday, August 19, 2010

Improvised walking

I've started noticing Talitha trying a different, more stable approach to walking.

Instead of crawling everywhere, she has started moving around here and there on her knees. It's a bit like a waddle but it seems to work for her. It also allows her to hold things in her hands while transiting from point A to point B.

I heard a saying once that goes something like this: A man never stands as tall as he does when on his knees praying.

It's interesting how many times in the scriptures the Lord invites, even commands us to "pray always". Our relationship with God is everything--both quality and quantity.

I haven't tried Tali's walking waddle but I do try to stand tall on my knees at least for a few minutes each day. That sure keeps me going even when I don't feel much like going.

Pretty amazing when you consider that every one of us has a direct channel of communication right to God. He can comfort and help us so we don't have to feel alone or helpless.

I've found that prayer takes effort but it sure does work.

Wednesday, August 18, 2010

In school again

Afton and Madeline started school today.

Since the older girls were getting their pictures taken to commemorate their first day of the new year, Talitha assumed everyone was posing for pictures so she came crawling over for her turn.


Then she got herself all ready with a nice smile and even folded her arms. (Prayer time, picture time...any time's a good time to fold those arms.)


Some days I'm not sure if Tali is the student or the teacher.

She's certainly been the subject of a few hundred lessons the Lord has been trying to teach me.

(There hasn't been much of a summer break at that school.)

Tuesday, August 17, 2010

Platelets and mothers

Talitha is doing a lot of climbing these days.

This age can make a parent nervous for a number of reasons. In Tali's case, she doesn't have enough balance to walk again yet so why should she have enough balance to climb up on things and not fall down?

I guess she doesn't.

Even though someone was sitting next to her, Tali still managed to fall off a kitchen chair this evening and get a little cut in her chin. She cried like more than her chin was hurt.

One of my first thoughts when I saw the cut was how grateful I am that her bone marrow is once again producing a good supply of platelets. It's easy to take for granted or forget that important ingredient in blood that magically stops the flow when there's a minor injury.

Tali's mom put her back together and all was soon peaceful again.

So tonight, I'm grateful for platelets and mothers.

Monday, August 16, 2010

The grass is always greener...

Audrey stepped away from the dinner table to slice some bread and while she was gone, I noticed Talitha sitting in her high chair just a plate away from where Audrey had been sitting.

Tali hadn't shown much interest in the dinner on her plate, but the food on her mom's plate? Now that's an entirely different story.

No sooner had her mother left the table than Tali began shoveling food from her mom's plate into her own mouth. If she had possessed a larger mouth I'm sure she would have engaged in this nefarious activity with even greater abandon.

What is it about human nature that invites discontent with what we do have and ravenous appetite for what we don't?

This little poem seems to capture the essence of the quandary:

As a rule,
Man's a fool.
When it's hot,
He wants it cool.
When it's cool,
He wants it hot.
Always wanting
What is not.
Never wanting
What he's got.

When the subject of the "want" and "don't want" dilemma is found in identical food whose only difference is the location on two different plates at the dinner table, we think it rather amusing.
 
But when the subject shifts to less discernable irony, the world has a way of clouding our view to keep us if it can from the truth that would otherwise set us free from chains of envy, even jealousy.
 
What a blessed antidote is found in the two great commandments:
 
1. Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind.
2. Thou shalt love thy neighbour as thyself.

Sunday, August 15, 2010

Perspective

Last Friday, I had the chance to go on a father's and son's outing up in the mountains about an hour from where we live. Trevor and I don't get out very often but we both love to fish when we get the chance. The lake near where we camped is stocked with trout throughout the summer so there's plenty of action if you know the few tips our friend who is a scoutmaster showed us.

Fun as the fishing was, the most inspiring part of the trip was lying on the ground, looking up at the star-filled sky. With no city lights to compete with, the Milky Way Galaxy was simply incredible. To make it even better, there were shooting stars every couple minutes. One of these meteors reached hundreds of miles across the sky leaving a streak of light that you could see clearly for several seconds.

There's something about the massive universe with its billions of galaxies that makes me feel both small and inspired at the same time. When I consider God's endless handiwork, I realize in a penetrating sort of way that no problem or challenge of this world even comes close to beginning to overwhelm Him. Tough as life can seem when I can't see beyond my little bubble, God--every once in a while--helps me see that He has it all in control and that He hears and answers ALL my prayers.

Knowing that God is in control doesn't make the hardships go away, but it does fill me with hope and courage to keep going knowing that there is a plan and a purpose. I think it's easier to do hard things when you know the effort is not in vain.

Oh, there is so much to learn.

Talitha is having about as normal a childhood at the moment as what I could hope for. Yes, she has a central line attached to her chest and yes there are a lot of medicines and vitamins to take every day, and no she can't be around tons of people yet. But she's playing, and laughing, and crying, and doing about what you'd expect healthy, little, almost-two-year-olds to do.

For that and all of God's mercies, we're grateful.

Saturday, August 14, 2010

If

If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don't deal in lies,
Or, being hated, don't give way to hating,
And yet don't look too good, nor talk too wise;

If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two imposters just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build 'em up with wornout tools;

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on";

If you can talk with crowds and keep your virtue,
Or walk with kings - nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man my son!

                          –Rudyard Kipling

Friday, August 13, 2010

Gearing Up for the Terrible, Two's

Talitha had a napless day (!). I made the mistake of putting her down with 2 teddy bears, never again. She talked and sang and giggled with them for a long time until I finally went in there and then immediately realized she needed a diaper change :O).

I did the job, then put her down again. For another hour she did more playing. It was late enough that I thought maybe letting her stay up and put her down early for the night would be the best idea. She was a "handful" the last hour, but we stuck it out.

She is certainly growing up into her two-year-old position just fine (and she wont even be officially two until the 31st!).

Tali is more of a climber lately. She is starting to pull herself up onto chairs and if on the couch will climb on the arm rests. We almost had a bad fall but she ended up being rescued just in time.

She also insists on going down the stairs--with someone holding 2 hands--and then climbs back up by herself. Then wants to repeat.

We are getting more and more two-year-old attitude when things don't go her way. We are glad for the "normalcy" of it, even though it has challenging moments.

You know parenthood is not for wimps.

Bravo to all who love, teach, and parent children, whatever the age. And thanks to all who have had an influence on our children and/or have helped us, the parents, stay sane.